Tag Archives: abled privilege

Keeping track

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Liberal ableism

I consider myself to be a dyed-in-the-wool liberal, at least in the way that the term is commonly defined in the United States. Hesitant as I am to list all of my “liberal” qualifications, let’s just get some things out of the way: I am unapologetically feminist, pro-LGBQTIA rights, and am actively working to be anti-racist (which is an ongoing process). I am against capital punishment, as well as the current prison system. U.S.-ian imperial, cultural and economic hegemony across the globe does not sit well with me, and I am of the opinion that it should be actively dismantled. There are also other classically “liberal” opinions that I hold which would take entirely too much space to list here.

My own political stance is a huge part of the reason why ableism from people who are ostensibly my “allies” feels like such a giant thorn in my side. Because it seems that no matter how much we may align politically on the surface, some liberals seem to be incapable of viewing me — and other people with disabilities — as fully human, and treating us accordingly.

Many will protest, “But I can’t be ableist! I’m progressive/liberal!”  But here’s the thing: You can be liberal and also behave in an ableist manner, even without knowing it. It is indeed possible — even with the best of intentions.

Ableism is there when a liberal makes “jokes” about a condition or conditions that ou does not have, such as Restless Leg Syndrome. Or OCD. Or depression. Or schizophrenia. Or chronic fatigue syndrome. Or mental disabilities. Often, these “harmless” jokes are made at the direct expense of people with disabilities or health conditions — both physical and mental. Ableism is there when someone insinuates that diet changes (EAT ORGANIC!!11) and exercise (What? You mean you DON’T work out every day?!) are the solution to all bodily problems, including disabilities, mental health issues, and chronic health conditions. It’s there when someone calls those on the opposite side of the political spectrum “insane.”

It’s most definitely been there when “liberals” with whom I once got along decided that my illness — and the physical and energy limitations that come with my having a chronic illness — no longer suited them and their needs, and so they were free to do things like make unsolicited comments about my illness or how I manage it, or sigh and roll their eyes if I needed to slow down or take a break. Or, worse, tell me that although they have “sympathy” for my health issues, granting me access or even basic accommodations so that I could participate in an activity to the best of my ability just “wouldn’t be fair” to other (abled) group members. For these liberals, everyone deserves respect and opportunity — so it follows that disabled people absolutely deserve to participate in society! Until, of course, accommodations for PWDs conflict with the desired pacing or focus of the liberals in question — or until the PWD no longer conforms to the “angelic” and/or “in need of uplift by the kind liberals” image. Yet often, these same liberals still insist that they can’t be ableist — they’re so progressive!

This is precisely what makes liberal ableism so insidious, and so often hard to bring up (much like hipster ableism and, to some extent, hipster racism and liberal sexism, as well as liberal racism, though I do not wish to conflate all of these as the exact same type[s] of oppression) precisely because so much energy is dedicated to brushing off any discussion of ableism in liberal circles with some claim to liberal or progressive “cred.” Instead of deflecting and immediately whining, “But I’m not like that! I’m liberal!” many of these folks might do well to take a step back and consider how they themselves are contributing to so much of the offal that PWDs face daily with their actions and words.

Recommended Reading for August 24, 2010

Wheelchair Dancer: Body Matters, Edges, and Disability

We all experience limitations and restrictions.  Not all of those — like not being able to speak a second language — are disabilities.  The second language example is a true comment, and I would have thought that it was a pretty obviously bad comparison.  But it and other similar remarks kept coming up.  In addition to those comments, I was also thinking about a second order of experience: the kind where someone claimed kinship/commonality/knowing what I am going through on the basis of their limiting, but non-disabling experience.  I’m referring to the kind of thing like, for example, comparisons of feeling tired from having flu and the tiredness in chronic fatigue syndromes or, say, multiple sclerosis.  A second example is that feeling sad or disappointed is not the same as the emotion of depression.

Lena at the ch!cktionary: What My Feminist Agenda Looks Like

I reject the argument that feminists can’t fight for women and for poor, queer, disabled, and non-White people. Because guess what? Many women are poor, queer, disabled, and non-White. For them, being part of the latter means many more disadvantages and much more discrimination than just being a woman. A feminist agenda has to recognize that women are not simply all oppressed in the exact same way because they share a gender.

Thea Lim at Racialicious: Sympathy Grifting: The Intersection of Race, Gender, and Fraud

Much of [fraudulent cancer patient Ashley Kirilow’s] success seems attributed to the fact that she easily roused pity with her little lost girl story and her brave smile. Kirilow embodied a version of white womanhood that we want to believe in (or at least we’ve been socially conditioned to embrace it): pretty, plucky, determined, and in need of rescue.

Pam Belluck for the New York Times: Tai Chi Reported to Ease Fibromyalgia

A clinical trial at Tufts Medical Center found that after 12 weeks of tai chi, patients with fibromyalgia, a chronic pain condition, did significantly better in measurements of pain, fatigue, physical functioning, sleeplessness and depression than a comparable group given stretching exercises and wellness education. Tai chi patients were also more likely to sustain improvement three months later.

Jane Hughes for the BBC News: New brain scan to diagnose autism

The Medical Research Council study looked at 20 non-autistic adults and 20 adults with Autism Spectrum Disorder (ASD).

They were initially diagnosed using traditional methods, and then given a 15 minute brain MRI scan. The images were reconstructed into 3D and were fed into a computer, which looked for tiny but significant differences.